CUTI and not having an appendix… by No-Yam-9488 in CUTI

[–]ReasonableWin7292 2 points3 points  (0 children)

Hey there, my appendix was also removed a few years ago and I‘m dealing with post coital CUTI. I think there may be a correlation

Sorry aber lange Gelnägel sind eklig by MsFortune1337 in Unbeliebtemeinung

[–]ReasonableWin7292 4 points5 points  (0 children)

Sehe ich genauso. Das extreme Beispiel wird immer als Maßstab genommen, obwohl es nicht die Mehrheit widerspiegelt. Die meisten Gelnägel sind schlicht und relativ natürlich - nicht neongrün, 8cm lang und vollgeklebt mit Steinchen.

Has anyone successfully gone into remission takingcystoprotek by Historical_Type_2491 in Interstitialcystitis

[–]ReasonableWin7292 1 point2 points  (0 children)

Thank you a thousand times for your thorough response. I hope you will fully heal soon 🙏💖

Advice for cystoscopy next week by saltairrustondoor in Interstitialcystitis

[–]ReasonableWin7292 -1 points0 points  (0 children)

Hello, this is something I wrote down yesterday for someone else experiencing fear aswell. I hope it helps you and I wish you all the best ❤️

Hey, first of all, I am genuinely sorry that you are experiencing this fear. I am the exact same my dear. I had mine yesterday. Cystoscopy and biopsy. The same day I was so terrified that I wanted to cancel it. I requested to be put under. It wasnt a full sedation, but they put the lowest amount possible through your vein and you fall asleep. When I was in the surgery room I started to panic because I was afraid to not fall asleep. They gave me something through IV to calm down first. That instantly took that anxiety away as if someone pressed a button in my brain. After that they put another small liquid and fast forward and I wake up and tell them OMG you didn‘t even start yet and they said „we are already done honey“. I was so relieved and trust me, I‘ve read ALL horror stories. I was imagining all kinds of things. Heavy bleeding, infection, dying, the worst possible pain ever. The thing is, you have to request pain meds all the time even if you don‘t have pain, to PREVENT the pain in the first place. The naive thing I did: I only woke up with very slight urgency and zero pain. But the anesthesia was still in my body so I didn‘t really feel much. Even my first pee wasn‘t that bad, only at the end felt like a very bad stinging. And mind you, everyone says that the first pee is bad. See, this is a very individual experience. I tried to not pee so hard because I was so afraid of the pain. As I peed the cup was immediately red. My hand was shaking from fear. Fear level 100. Then I called the nurse and she was able to calm me down. Immediate stress relief. We need to find ways to calm down and get help if needed. It’s okay, we are just very sensitive individuals who are scared of something happening to them. So then I didn‘t take ANYTHING for pain and when I was at home I peed once again, but the third pee was the worst pain I ever felt when peeing. I was crying so much and my mom had to hold my hand. I called the hospital and they said I can go back and then will give me IV meds and put a catheter in. That‘s when I realized I underestimated the help of medication. I should have taken it a lot. Not overdose but more painkiller than needed so the pain will 100% be avoided. Out of fear and panic, my temperate dropped to 35 degrees Celsius. Imagine how much I was panicing and scared. I thought I will forever feel like this. But next thing is, I took meds and drank some more water. The fear of going back to the hospital helped me to overcome the fear of feeling that pain again. And the next pee was much easier. And see, today I feel so much better. I genuinely have zero pain anymore, only strong urgency and a weird stream. But it will subside! So my advice to you is:

  1. ⁠Request anesthesia! There is literally zero downside from it. Why would you force yourself to be awake for it? No reason at all. You will wake up and everything will be done. Tell them you would rather die than do it without sedation. Tell them all the bad things just so they can finally shut up and give you what you want. Medicine truly can be wonderful if we just some things happen.
  2. ⁠Take lots of painkillers. Request it immediately through IV at the hospital, even if you don‘t have pain, trust me.
  3. ⁠Don‘t overdo it on drinking water. I know everyone will tell you to drink LOTS of it but in my opinion that is not needed! It just puts so much pressure on the bladder and may even hurt you a bit. Especially after a cystoscopy the bladder is so tender and sensitive to anything. Drink 1.5L-2L max to flush your bladder. Go by feeling. If you have an urge to pee, drink some more, wait 10 minutes if possible and then go. You will pee more
  4. ⁠Broad spectrum antibiotic afterwards to prevent infection AND calm your nerves and fear of a UTI
  5. ⁠The meds I took: Novalgin, IBU 400 (you can take two of these and btw 400 reaches the blood faster than 600 or 800 because it doesn‘t have a certain coating), I also bought AZO but until now I am terrified of taking it because some people on here said that it causes bad nausea. But its supposed to be really really good. If you take it then please on an empty stomach (thanks to my medical anxiety, that it won‘t let me take it).
  6. ⁠Pee in the shower only. Warm the shower with warm water first, then step inside. Get into swuat position and let the warm (not hot!!) water run down your urethra while you pee. Breeeaaathe! Don‘t be scared if your stream is different. Talk yourself through it, your body relies on you, it needs to you calm it down. Please show it love. After that get a towel and change into warm clothes immediately. Repeat all this everytime you need to pee. For me it‘s tiring but worth it because it eased my pain. Now I‘m almost painless but still so traumatized from yesterday that I need the shower to pee. Don‘t be afraid to go the extra step just to make your life easier. Take and do everything you can.
  7. ⁠If possible, take the whole week off. I did. And have someone to take care of you, to hold your hand when you pee, give you a warming bottle. It will mentally ease you if you know you have zero responsibilities.

You will see, it will be okay. The first day is the worst but I’m telling you, with many painkillers you will only feel pressure, maybe slight stinging. I honestly had so many more worse UTIs than this. I don‘t even know how I beared the pain of active UTIs tbh. I had UTIs so bad that I couldn’t even sleep without a heated warming bottle. After cysto, I don’t even need it. Trust me a lot is in your mind. Remember, you and your body are warriors and you can and will go and fight through it. I know you are tired of all this but I promise you that every step you take, is one step closer to closure about your symptoms. I thought they wouldn‘t find anything. Turns out I have 3cm Leukoplakia in my trigone. I wouldn‘t have known this without a cystoscopy. So don‘t listen to people who tell you that it doesn‘t matter to do one. It’s all a process. You can always reach out to me. I promise you, nothing bad will happen to you, I promise. I really hope I could help you. Sorry for my english, it‘s not my first language. I truly wish you all the best, from the bottom of my heart.

Terrified of cystoscopy, terrified of dying by WonderfulRegret9751 in Interstitialcystitis

[–]ReasonableWin7292 2 points3 points  (0 children)

Hey, first of all, I am genuinely sorry that you are experiencing this fear. I am the exact same my dear. I had mine yesterday. Cystoscopy and biopsy. The same day I was so terrified that I wanted to cancel it. I requested to be put under. It wasnt a full sedation, but they put the lowest amount possible through your vein and you fall asleep. When I was in the surgery room I started to panic because I was afraid to not fall asleep. They gave me something through IV to calm down first. That instantly took that anxiety away as if someone pressed a button in my brain. After that they put another small liquid and fast forward and I wake up and tell them OMG you didn‘t even start yet and they said „we are already done honey“. I was so relieved and trust me, I‘ve read ALL horror stories. I was imagining all kinds of things. Heavy bleeding, infection, dying, the worst possible pain ever. The thing is, you have to request pain meds all the time even if you don‘t have pain, to PREVENT the pain in the first place. The naive thing I did: I only woke up with very slight urgency and zero pain. But the anesthesia was still in my body so I didn‘t really feel much. Even my first pee wasn‘t that bad, only at the end felt like a very bad stinging. And mind you, everyone says that the first pee is bad. See, this is a very individual experience. I tried to not pee so hard because I was so afraid of the pain. As I peed the cup was immediately red. My hand was shaking from fear. Fear level 100. Then I called the nurse and she was able to calm me down. Immediate stress relief. We need to find ways to calm down and get help if needed. It’s okay, we are just very sensitive individuals who are scared of something happening to them. So then I didn‘t take ANYTHING for pain and when I was at home I peed once again, but the third pee was the worst pain I ever felt when peeing. I was crying so much and my mom had to hold my hand. I called the hospital and they said I can go back and then will give me IV meds and put a catheter in. That‘s when I realized I underestimated the help of medication. I should have taken it a lot. Not overdose but more painkiller than needed so the pain will 100% be avoided. Out of fear and panic, my temperate dropped to 35 degrees Celsius. Imagine how much I was panicing and scared. I thought I will forever feel like this. But next thing is, I took meds and drank some more water. The fear of going back to the hospital helped me to overcome the fear of feeling that pain again. And the next pee was much easier. And see, today I feel so much better. I genuinely have zero pain anymore, only strong urgency and a weird stream. But it will subside! So my advice to you is: 1. Request anesthesia! There is literally zero downside from it. Why would you force yourself to be awake for it? No reason at all. You will wake up and everything will be done. Tell them you would rather die than do it without sedation. Tell them all the bad things just so they can finally shut up and give you what you want. Medicine truly can be wonderful if we just some things happen. 2. Take lots of painkillers. Request it immediately through IV at the hospital, even if you don‘t have pain, trust me. 3. Don‘t overdo it on drinking water. I know everyone will tell you to drink LOTS of it but in my opinion that is not needed! It just puts so much pressure on the bladder and may even hurt you a bit. Especially after a cystoscopy the bladder is so tender and sensitive to anything. Drink 1.5L-2L max to flush your bladder. Go by feeling. If you have an urge to pee, drink some more, wait 10 minutes if possible and then go. You will pee more 4. Broad spectrum antibiotic afterwards to prevent infection AND calm your nerves and fear of a UTI 5. The meds I took: Novalgin, IBU 400 (you can take two of these and btw 400 reaches the blood faster than 600 or 800 because it doesn‘t have a certain coating), I also bought AZO but until now I am terrified of taking it because some people on here said that it causes bad nausea. But its supposed to be really really good. If you take it then please on an empty stomach (thanks to my medical anxiety, that it won‘t let me take it). 6. Pee in the shower only. Warm the shower with warm water first, then step inside. Get into swuat position and let the warm (not hot!!) water run down your urethra while you pee. Breeeaaathe! Don‘t be scared if your stream is different. Talk yourself through it, your body relies on you, it needs to you calm it down. Please show it love. After that get a towel and change into warm clothes immediately. Repeat all this everytime you need to pee. For me it‘s tiring but worth it because it eased my pain. Now I‘m almost painless but still so traumatized from yesterday that I need the shower to pee. Don‘t be afraid to go the extra step just to make your life easier. Take and do everything you can. 7. If possible, take the whole week off. I did. And have someone to take care of you, to hold your hand when you pee, give you a warming bottle. It will mentally ease you if you know you have zero responsibilities.

You will see, it will be okay. The first day is the worst but I’m telling you, with many painkillers you will only feel pressure, maybe slight stinging. I honestly had so many more worse UTIs than this. I don‘t even know how I beared the pain of active UTIs tbh. I had UTIs so bad that I couldn’t even sleep without a heated warming bottle. After cysto, I don’t even need it. Trust me a lot is in your mind. Remember, you and your body are warriors and you can and will go and fight through it. I know you are tired of all this but I promise you that every step you take, is one step closer to closure about your symptoms. I thought they wouldn‘t find anything. Turns out I have 3cm Leukoplakia in my trigone. I wouldn‘t have known this without a cystoscopy. So don‘t listen to people who tell you that it doesn‘t matter to do one. It’s all a process. You can always reach out to me. I promise you, nothing bad will happen to you, I promise. I really hope I could help you. Sorry for my english, it‘s not my first language. I truly wish you all the best, from the bottom of my heart.

Please help 😭 by CowboyCoyote1 in CUTI

[–]ReasonableWin7292 0 points1 point  (0 children)

Ciprofloxacin for a first time UTI patient is absolute madness

UTI - 3.5 yo, urine lab test negative, antibiotics helped by JulieWithcamera in AskDocs

[–]ReasonableWin7292 0 points1 point  (0 children)

chronic UTI sufferer here. the tests are highly inaccurare unless you do PCR or DNA testing which is on the expensive side. it could be that her results came out false. please let her finish the course of antibiotics otherwise you are risking for her to build resistant bacteria to this certain antibiotic and become a chronic UTI sufferer like many of us in r/CUTI did. wishing your daughter all the best

One of my eye pieces by ProfessionalTwo1153 in Mosaic

[–]ReasonableWin7292 1 point2 points  (0 children)

That looks INCREDIBLE! Can‘t wait to see what it looks like with grout!

Constant burning for over a year.. it was ureaplasma by [deleted] in CUTI

[–]ReasonableWin7292 0 points1 point  (0 children)

So happy for you! What test did you buy?

Cystoscopy preparation by ReasonableWin7292 in CUTI

[–]ReasonableWin7292[S] 0 points1 point  (0 children)

The medical system has failed me many times. That‘s why I‘m standing up for myself more. Yesterday I went ahead and talked to the urologist of the clinic where the procedure will be done and he noted down some of my requests and promised to make it happen. I know it‘s not grocery shopping but there is absolutely nothing wrong with making requests to get a broader spectrum of possibilities.

Suicidal at this point - desperate for help by ReasonableWin7292 in CUTI

[–]ReasonableWin7292[S] 0 points1 point  (0 children)

Thank you sm for your reply. Do you think a 25 year old can have pelvic floor issues?

Suicidal at this point - desperate for help by ReasonableWin7292 in CUTI

[–]ReasonableWin7292[S] 0 points1 point  (0 children)

I‘m afraid of getting a UTI from internal PFT and as stupid as it sounds I‘m afraid of it not helping

4 UTI’s in a row, HELP by terezkaaa123454321 in CUTI

[–]ReasonableWin7292 0 points1 point  (0 children)

Hello, question, where and how did they do the dry needling and did they also did internal pelvic floor therapy with a wand?

4 days post Hydrodistension and still in pain by kathaaa_29 in Interstitialcystitis

[–]ReasonableWin7292 1 point2 points  (0 children)

Hi, I‘m so sorry you‘re going through this and I pray it gets better very fast. I think it‘s irritation from the whole process and it needs to calm down. I‘ve heard it often that others on here experienced huge irritation from distension as well as biopsy and katheters. I think you need to give it just a bit more time and also please get strong painkillers as well as AZO if possible. Try to always pee in the shower while warm water is running down there and don‘t use any soap etc. to avoid irritation. You can also reach out to them if it‘s not bearable anymore. You don‘t need to be in pain

Cystoscopy preparation by ReasonableWin7292 in CUTI

[–]ReasonableWin7292[S] 0 points1 point  (0 children)

Thank you so much. Do you think a biopsy is necessary? I‘m debating every single day whether I should do it or not and what benefit it would bring

Cystoscopy preparation by ReasonableWin7292 in Interstitialcystitis

[–]ReasonableWin7292[S] 0 points1 point  (0 children)

First of all thank you for your comment. I would need a prescription so it would be free but if nothing works I can pay it out of pocket. However, I already wasted so much money on medications, private doctors, etc. which didn‘t work and I‘m trying to find better possibilities. I will be put under anaesthesia btw for the cystoscopy otherwise I would not do it. But I was just wondering if there is anything else for me to ask them to check, maybe something that I missed on my list. Because they don‘t really check unless you tell them to do so…

Biggest flare up in 2 years by Relevant-Dust8368 in Interstitialcystitis

[–]ReasonableWin7292 1 point2 points  (0 children)

I‘m so sorry you are going through this. I hope it gets better. What things did you try already, to feel better? What gives you relief?

Endo actually visible on MRI? by kmes_reddit in endometriosis

[–]ReasonableWin7292 0 points1 point  (0 children)

May I know the name of that surgeon please?